West Syndrome, or Infantile Seizures: Seren's Journey To Becoming Medication-Free

Feb 5, 2020

Interviews & Inspiration | Lauranne Heres

Cat Wederell is a Nursery Practitioner and has been married to husband Mike since 2013. After trying to conceive for six years, they finally fell pregnant in early 2016 and after an uneventful pregnancy, Cat gave birth to little Seren in October via emergency C-section as she was two weeks overdue. After a few months, something started to change and they had to fight tooth and nail for a diagnosis.

"When Seren was around 6 weeks old I noticed her making a few odd movements as she was feeding from me. They came out of nowhere and were short lived. When she did them again during a visit to my parents’ house I mentioned it and we all believed that they were a form of abdominal cramping, as she appeared to be doing some odd straining as if trying to pass wind or fill her nappy (pretty normal baby behaviour). A couple of weeks on, the movements began increasing in frequency and intensity, Seren would draw her knees up, raise/shrug her shoulders or hunch them forward, her eyes would go very glazed as though she was “zoned out” and she would sometimes become distressed. We were told it sounded like colic and/or reflux and to continue using Infacol and keep an eye on it and that she should “grow out of it”.

West Syndrome, or Infantile Seizures- Seren's Journey To Becoming Medication-Free Femie Magazine
Image Credit to: Cat Wederell

By Christmas Seren would become very distressed in the evenings and would make these movements quite violently, at times throwing her arms out straight, doubling over and screaming as though in pain. We mentioned this at her check-ups and at her 12 week immunisations with no real concern shown until during the second week of January, our gorgeous content baby suddenly stopped smiling and quickly her development seemed to be regressing from a perfectly normal 3 month old back to no smiling, no laughing, not grabbing toys, unable to roll, unable to track with her eyes, very distant and “grumpy”. By this point we were very concerned and felt uneasy about it all but were told it may be linked to silent reflux and given Gaviscon. "

How long did it take for you to be taken seriously by a doctor?

"On Tuesday 24th January 2016, Seren suddenly suffered a massive attack of these odd movements and from a seated position her whole body was doubled over very rapidly, arms outstretched, legs up and her eyes rolling and head slowly turning to the side. Once she came around, Seren seemed very confused and was very upset. I frantically said to my husband Mike that I wasn’t going to be fobbed off with this diagnosis of colic/reflux or grumpiness after jabs any longer, something was seriously wrong with our baby. I googled a description of what we had been observing and stumbled across the word “seizure”. This was of course very scary and upsetting. I read further descriptions of symptoms which matched hers and finally looked for videos of children moving in the same way. From my search, I concluded that Seren was having infantile seizures also referred to as “spasms”.

West Syndrome, or Infantile Seizures- Seren's Journey To Becoming Medication-Free Femie Magazine
Image Credit to: Cat Wederell

The very next day, Seren was rushed to our local hospital as we were too concerned to wait for a specialist neurologist appointment my father had arranged for Monday. After some pushing, they agreed to monitor her and, in the meantime, I began filming her seizure episodes as evidence. Even now, I was still being fobbed off and told they were not “classic” seizures. Finally, that evening, a Doctor finally witnessed an episode first-hand and agreed that it looked like abnormal movements."

What happened once you were given a definitive diagnosis?

"Thursday 26th January 2016, Seren had an EEG performed. She had to be asleep for half of it and awake for the other half; this monitored the activity in her brain and that afternoon my last hopes that maybe I was wrong were shattered. The EEG confirmed our thoughts and she was diagnosed with infantile spasms/seizures also known as West Syndrome after the Doctor who discovered it. On Friday, Seren and I were transferred via ambulance to the Evelina neurology ward at St Thomas's in London. We went through the whole story again and Seren was observed during her episodes. Seren had around 80 seizures throughout the day and was very upset.

That weekend, Seren had a huge amount of blood taken and ECGs to check her heart while she had her first dose of some vitamins that can help reduce seizures. This did not seem to help, and she continued to have many seizures. On Saturday evening Seren had her first dose of anti-seizure medicine called Vigabatrin and was monitored all night.

Femie Magazine West Syndrome, or Infantile Seizures - Seren's Journey To Becoming Medication-Free
Image Credit to: Cat Wederell

They continued to monitor her on Sunday, and she had an awful episode of 40 seizures in the space of 10 minutes! On Monday 30th of January 2016, they performed a lumbar puncture, followed by and MRI on Tuesday, and it wasn’t until Wednesday that Seren finally started to respond to the medication.

She had been very sleepy but settled that day and only had 4 episodes of mild seizures. Things were really starting to kick in. At 11pm that night we arrived home and started her care plan on our own, hoping we may get her back to pick up her development again."

How many different types of medications has Seren been on since being diagnosed? How long did it take to find the right combination?

"Seren was initially on Pyridoxal-5-phosphate, Biotin, Vigabatrin (AKA Sabril) and folic acid which all had to be made up individually. When these frontline medications did not work for her, she was started on ACTH steroid injections once every other day for two weeks. When this also failed, Seren was then given another oral steroid called Prednisolone at a very high dose. Once seizure control was achieved 3 months later, we weaned her off the steroids and moved on to a temporary drug called Topirimate. She eventually became medication free Christmas 2017."

 Femie Magazine West Syndrome, or Infantile Seizures - Seren's Journey To Becoming Medication-Free Femie
Image Credit to: Cat Wederell

Why do you think it took so long to figure out what was happening?

"There appears to be very little information out there about West Syndrome, and overworked doctors often dismiss the symptoms as something else because they are unfamiliar with it. It’s very difficult because it doesn’t necessarily look like seizures people usually associate with epilepsy, and that means that it takes much longer to find the right diagnosis. It’s too often the role of the parent to google for symptoms and find information online that they then suggest to the doctor."

How is Seren doing now? How is she being monitored?

"Seren has been seizure-free for over two years now and medication-free for over a year. However, he has been developmentally delayed. Most children with West Syndrome will develop another type of epilepsy in later childhood or adulthood. One out of five could develop Lennox-Gastaut syndrome, which is a severe form of epilepsy. Seven out of ten children with West syndrome have mental disabilities, depending on the cause of their illness.

Femie Magazine West Syndrome, or Infantile Seizures - Seren's Journey To Becoming Medication-Free Femie
Image Credit to: Cat Wederell

She could get autism, especially if the seizures came from Tuberous Sclerosis Complex, a condition causing non-cancerous tumours in the body and brain. She is also at risk of becoming hyperactive, which means she’ll have trouble to concentrate or be quiet and still in school.

As a family we are involved in the 100,000 Genomes Project. Bloods were taken in 2017, but we haven’t had any results back yet. It’s an incredibly long process. I know families who started in 2015 and who are just now getting the first results. But they might never find a reason for Seren’s seizure history."

How has this affected your family? Did Mike get time off work when she was first diagnosed? Have you been offered any therapy by the hospital?

"We have most definitely been affected by this ordeal. My depression and anxiety have been made worse by the whole thing, and Mike felt very helpless when he had to go to work while I was at home by myself with her. He took a week off while we were in hospital getting all the tests done, but only two days were paid leave, the rest was unpaid.

The hospital did not offer any form of therapy. The only support has been via Facebook groups and the UKIST website."

When did you go back to work? Did Seren go to Kindergarten?

"I went back to work two days a week in October 2017. Seren was still on medication twice a day and I was terrified leaving her in anyone’s care but my own for fear of it all happening again. She stayed home with Mike one day, and with my parents’ the next. They were the only people I felt comfortable leaving her with, especially as my father is a GP. I never left her for more than eight hours until she was 17 months old as I couldn’t relax not being with her.

She now goes to the nursery I work at one day a week and still spends one day at home with Mike. I’m incredibly anxious about her starting school in September."

Femie Magazine West Syndrome, or Infantile Seizures - Seren's Journey To Becoming Medication-Free Femie
Image Credit to: Cat Wederell

Are you in touch with other families who have experienced similar hardship, people you have met through the hospital maybe?

"I have met a wonderful group of families through UK Infantile Spasms on Facebook. We share stories, advice, hope and support for each other. We do a yearly meet up and some of us who are further along in our journey are now trying to raise as much awareness as possible."

What can be done to raise awareness for Infantile Seizures?

"The UK now has Infantile Spasms Awareness Week every year from the 1st to 7th December. There is also a charity called UKIST (UK Infantile Spasms Trust) which is trying to raise awareness and supports the families of children affected as well as the medical community trying to find solutions. They fundraise and have many online resources for people who need them.

Please find more information on Cat’s Facebook page about Seren’s Journey here. There are videos of Seren’s seizures and plenty of updates on her development over the years."

(Parts of this interview are from an original Facebook post by Cat)